Although her granddaughter didn’t have the words to fully express it, her question, asked with a child’s innocence, embodies the stigma so familiar to lung cancer patients and their families: that people with lung cancer must be or have been smokers and are, therefore, to blame for their disease.

Lung cancer patients are used to being asked “Did you smoke?” when they tell others of their diagnosis. They get that question. A lot. But it never stops smarting.

“I think it’s kind of rude, that that’s the first thing that comes to people’s minds,” says Lesnick.

Lori Monroe, a nine-year lung cancer survivor from Bowling Green, Ky., says that the question often comes even before words of sympathy or support. “Even before, ‘Oh I’m sorry you’re going through this. It’s almost like this knee-jerk reaction. It’s really disheartening.”

“I don’t think they ask in a mean way or anything,” she says. “We’re educated in our coming-up years: ‘don’t smoke, or you’ll get lung cancer.’”

But White worries that lung cancer is not viewed as something to fight, something to “take care of” as much as something the patient deserved, something to be blamed for.

“Even the people that don’t ask ‘did you smoke,’ are they thinking that you brought this on yourself?” she wonders. “And I don’t want anyone to think that about me or anyone else with lung cancer.”

Monroe used to get defensive when asked, responding sharply with “Are you suggesting that I deserve this?”

“And I rethought that and thought maybe they’re really not trying to place blame as much as they’re trying to separate themselves,” to convince themselves that they won’t have to worry about lung cancer if they don’t smoke.

Families and caregivers are also plagued by that question.

“I think it’s important for people who are smokers to understand that they’re increasing their risk (of lung cancer),” says Carrie Steinbeck, whose father Jesse died of lung cancer in 2007 at age 54. “But at the same time, I think it’s sad that it has led to the assumption that all patients with lung cancer smoked.”

Carrie and her sister Kate wish there would be less focus on the person’s past, and more on what can be done to help now.

“I (understand asking the question) for the knowledge and research portion of it,” Kate says. “But in an everyday conversation, it shouldn’t matter.”

It’s a disease that gets very little empathy or sympathy, says Monroe.

“As a patient, it’s hard enough to fight for your life and go through all the things that you have to go through just for treatment, but then to feel like people don’t really understand the disease, that’s very hard,” she says.

The cancer connection

The link between smoking and lung cancer is indelibly etched into our collective psyche – and for good reason.

The 1964 Surgeon General’s report on Smoking and Health was the first official statement on the link between smoking and lung cancer. The report estimated that average smokers had a ninefold to tenfold higher risk of developing lung cancer compared to non-smokers, that heavy smokers had at least a twentyfold increased risk, and that risk rose with the duration of smoking and diminished with the cessation of smoking.

That public acknowledgement of the risks of smoking (which also included heart disease, bronchitis and emphysema, as well as the risks of smoking during pregnancy) set the stage for later policy changes – e.g., limitations on cigarette advertising and warning labels on tobacco products.

Today, the American Cancer Society’s website states: “About “85% to 90% of lung cancer deaths are caused directly by smoking, and many others are caused by exposure to secondhand smoke.”

While this may be accurate, there are other ways to look at the statistics.

Kim Norris, a lung cancer advocate whose husband died of lung cancer in 1999, thinks that the “85% to 90%” figure is misleading because it includes former smokers who may have quit decades ago.

“About 60 percent of new diagnoses are in nonsmokers,” she says. That includes about 10 percent to 15 percent of lung cancers diagnosed in people who have never smoked. The other 45 percent to 50 percent of diagnoses are in former smokers – which can range from people who quit a few months ago to several decades ago.

“I think the biggest misperception is that once you quit, you are no longer at risk for lung cancer,” says Monroe. “And that’s so not true.”

“I’ve had people who quit in 1965 as soon as the (Surgeon General’s) report became widely known, and now, almost 50 years later, coming down with lung cancer,” says David Carbone, M.D., the Harold L. Moses Professor of Cancer Research.

Carbone thinks we could do a much better job of helping people quit – but he sees the negative impact the smoking stigma has on his patients.

“Fundamentally, even if they were a smoker, it is unfair to patients to be insensitive to their situation just because of something that happened in the past – and sometimes even for something they did before it was known to be harmful,” he says. “People aren’t criticized for their coronary artery disease because they like to have ice cream. So I think it’s unfair for smoking.”

The Steinbeck family – (from left) Martha, Kate, Carrie and Jesse – cheering on the University of Kentucky Wildcats basketball team.

“If you say ‘I have breast cancer’…or ‘I have a brain tumor’…nobody says ‘oh where’d you get that from?’ or ‘what have you been doing or eating?’”

“You could be a smoker and get breast cancer, but no one is going to ask you ‘did you smoke?” she says. “And you have a better chance of recovering from (breast cancer) because of the research, the money and the time that has gone into it because it doesn’t have a stigma.”

Many people have done things in their past that may have adverse health effects, but smoking is, apparently, the one unforgivable sin in the eyes of many.

In a recent international survey conducted by Ipsos MORI, over one-fifth of U.S. respondents (22 percent) admitted to having less sympathy for lung cancer patients, given the disease’s link to smoking, than for other types of cancer.

“I don’t care what you did in your life,” Norris says. “If you have cancer, you deserve all the know-how, all the smarts, all that knowledge we have as a society to give you every option for treatment and a cure.”

Stunted research funding

It is difficult to determine whether the stigmatization of lung cancer has affected research funding. But, when viewed in light of the number of deaths caused, there is a large disparity between lung cancer funding and funding for other cancer types.

But even without counting the deaths from all other cancer types, lung cancer alone would still be the No. 2 leading cause of death in the country, responsible for more American deaths than breast, prostate and colon cancer combined. The American Cancer Society estimates 222,520 new cases and 157,300 deaths from lung cancer this year – which accounts for nearly one-third of all cancer deaths.

That’s equivalent to losing a city larger than Clarksville, Tenn., every year – or a Boeing 747 full of passengers every day.

Survival rates for lung cancer are among the lowest of all cancer types. Only about 15 percent of patients survive five years after the initial lung cancer diagnosis. In comparison, five-year survival rates for colorectal, breast and prostate cancers are 65 percent, 89 percent, and 99 percent, respectively. Only pancreas, liver and esophageal cancers have lower five-year survival rates – but they’re also much rarer.

One of the main efforts to combat lung cancer has been disease prevention through smoking cessation. But, as Carbone notes, even if smoking could be eradicated today, it would still take at least 20 to 30 years, perhaps even longer, for lung cancer rates to return to “baseline.” (And baseline is not zero. The 10 percent to 15 percent of cases in never smokers amounts to 15,000 to 23,000 deaths each year due to lung cancer – a total that would still put lung cancer in the “top 10” cancer killers.)

There are many views on how federal funding for research should be allocated – whether by the number of deaths caused by a disease, by the number of years of life lost, or by some other criteria.

“One measure of how important a problem is is the number of deaths. I think if you’re trying to measure patient impact, the number of deaths is a reasonable denominator,” Carbone says.

Lung cancer is clearly in the lead for the number of cancer deaths it causes. But federal funding for lung cancer research seems out of proportion compared to other common cancer types.

The National Cancer Institute provides the main source of funding for cancer research in the United States. Using the most recent available data on NCI funding per cancer and the estimated number of deaths this year, lung cancer received $1,875 per death, compared to $17,028 per breast cancer death, $10,638 per prostate cancer death, $6,008 per colorectal cancer death. (If broken down by funding per new case, the situation is a bit more equitable – $3,276 for breast, $1,565 for prostate, $2,164 for colorectal, and $1,325 for lung – although it still receives less than half the amount per case as breast cancer).

When the Lung Cancer Alliance compiled total FY2009 funding by all three major federal agencies (NIH, CDC and DOD), lung cancer appeared to fare even worse – $1,249 per lung cancer death, $27,480 per breast cancer death, $14,336 per prostate cancer death, and $6,590 per colorectal cancer death.

“If you think that we should allocate proportionally to the mortality rate of these diseases, then (lung cancer research funding) is totally disproportional,” says Pierre Massion, M.D., associate professor of Medicine and Cancer Biology.

Kim Norris realized during an advocacy trip to Washington, D.C., that most lawmakers simply aren’t aware of the magnitude of the problem.

“In two days, we met with seven different members of Congress. And of the seven, five had family members who had been directly impacted by lung cancer,” she recalls. “The response we got from members of Congress, even those who had lost loved ones, was ‘we didn’t know.’”

Lori Monroe co-founded an advocacy organization to help raise research funding for lung cancer. (Photo by John Russell)

“I think people just assume somehow that lung cancer is taken care of and funded,” Norris says. “And most people are shocked that it is not.”

Monroe had a similar experience when speaking to a politician about the disparity in lung cancer research funding compared to breast cancer funding.

“He said ‘well, every woman is at risk for breast cancer because they have breasts,’” Monroe recalls. “I said EVERYBODY is at risk for lung cancer because they have lungs.”

Attacking early

Researchers continue on with what resources they can pull together. Vanderbilt-Ingram Cancer Center investigators have been successful in securing competitive federal grants. VICC has one of seven lung cancer “Specialized Programs of Research Excellence,” or SPOREs in the country.

David Carbone, M.D., is the principal investigator for the lung cancer SPORE, and his group is working to develop a blood test for lung cancer.
Part of the reason behind the sobering survival rate is that lung cancers are most often diagnosed at an advanced stage.

“Lung cancers arise inside your lungs, so you can’t see it or feel it. There’s a huge space in there, several gallons of air, and you can grow a grapefruit sized tumor and not even know,” explains Carbone. “If you have a grapefruit sized tumor in your brain, in your breast or on your skin, you’ll notice that.”

Where breast cancer has mammography, colorectal cancer has colonoscopy, and prostate cancer has the PSA (prostate specific antigen) blood test, there is no equivalent screening test for lung cancer.

“As opposed to other types of cancer, we can identify a high-risk population, but we don’t know what to do for them. We can’t intervene; there are no approved screening tests…and no drugs that (we can give to) reduce your risk of getting lung cancer even after you quit smoking,” Carbone says.

Results from the National Lung Screening Trial, reported in early November, showed that screening with CT scans can reduce lung cancer deaths by 20 percent among current and former heavy smokers age 55 to 74. However, CT scans can produce false positives, which may lead to unnecessary medical tests.

“The CT scan is not the answer to everything because there are a lot of lung infections (and other benign diseases) that cause small lung nodules that are not cancer,” says Carbone.

“That’s one of the reasons we’re working on developing a blood test for lung cancer. If you have a lung abnormality (show up on X-ray or CT), we could send off a blood test to see if that would give us a clue as to whether (the abnormality) is cancer or not.”

While prevention is the best strategy, Massion says, “there is an urgent need to develop early detection strategies.”

He notes that the disease process happens long before a lung cancer diagnosis in most cases, and that detecting pre-cancerous changes in the lining of the airways might help identify patients at high risk of developing cancer.

“Once the cancer is established, it is very hard to treat. But there’s a long window of opportunity to detect it, before the disease is fully invasive, and this is the disease process I wish to target,” he says.

Massion, Carbone and other researchers involved in Vanderbilt-Ingram’s lung cancer SPORE participated in a trial to test a chemopreventive therapy called Iloprost.

The trial looked at pre-cancerous changes in the lungs of people who had quit smoking and had visibly damaged airways. Preliminary results showed that, after six months of taking the drug, that damage had significantly improved. The results of the trial, which Massion calls “very encouraging” will be reported soon.

Massion also recently received a grant to support his group’s work as an “Early Detection Research Network Clinical Validation Center.” The EDRN is a network of centers funded by the National Cancer Institute to support researchers working on early detection of cancers. Massion’s group is one of only two clinical validation centers in the country.

His group will be developing a screening trial for high-risk individuals – current and ex-smokers, typically over 50 years of age, who also have either COPD or a family history of lung cancer.

The study will screen 600 patients with clinical evaluation, chest CTs and bronchoscopy and will follow the patients for about five years. The goal will be to test new candidate biomarkers in tissues donated by participants during the study period. Massion says that the study may “provide a chance for participants to benefit from early diagnosis of lung cancer (should they develop the disease) when there is still a great chance for a cure.”

“I’m an optimist, but I’m also a realist,” he says. “I don’t think we’re going to cure lung cancer in two years or even 10 years, but we need to really change how we manage the disease – how we approach it, how we prevent it, how we diagnose it, and how we treat it.”

“We have to work on all fronts.

Hope from the ashes

Private foundations and non-profits have historically filled the gaps when federal funding is perceived to be lagging. These organizations also serve to raise awareness, and many times along with the success of their awareness campaigns, federal funding also increases. Such has been the case in research funding for breast cancer and HIV/AIDS.

But the sting of the stigma is also felt by foundations trying to raise awareness and funding for lung cancer research.

Norris, Monroe and others saw the strain the funding disparity caused on researchers – and the resulting dearth of exciting new treatments and detection strategies.

“We got tired of trying to get money out of the federal government…we got tired of watching (lung cancer researchers) have all these brilliant ideas and they would have to spend so much of their time trying to fight for every penny they have,” says Norris. “We wanted them behind their microscopes, doing what they did best.”

Prompted by frustration and necessity, Norris, Monroe and another lung cancer survivor, David Sturges, co-founded the Lung Cancer Foundation of American (LCFA) in 2007 to raise awareness about the disease and money for lung cancer research.

They analyzed the available data about private fundraising for lung cancer. It was even bleaker than the federal funding picture.

Norris says that, at the time, there were “maybe 20 lung cancer foundations, and maybe in total they brought in $5 million to $10 million. Maybe.”

In comparison, she notes, a single breast cancer foundation, Susan G. Komen for the Cure, brought in $161 million in one year alone (2006). And breast cancer, they found, has several hundred foundations dedicated to fundraising and awareness.

No one is condemning the success of the breast cancer non-profits. In fact, lung cancer advocates and researchers wish they could harness the same energy for lung cancer research.

“I think (their success) is fantastic, and I think that’s the way lung cancer research funding should go,” says Massion. “But we need patient advocates, and the problem (with lung cancer) is that our advocates generally don’t live very long.”

Lung cancer patients undergoing treatment often feel so bad that they don’t have much energy to advocate, Carbone notes. But sometimes families and friends step in – although not nearly often enough.

“One of the things I would love to see is family and friends who have lost someone get involved,” says Norris. “But usually, after they’ve lost someone, it is so painful they want to just put it aside.”

And the stigma lingers even after death.

“I’ve run into family members who, if the person did smoke, they blame them,” Norris says.

But over her eight years in advocacy, Norris sees signs of hope.

“I’ve seen the number of advocates grow. I’ve seen momentum happening. People are becoming more aware, but we still have a lo-o-o-ong way to go.”

One way to make progress is for more lung cancer patients and survivors (and their friends and families) to get involved.

For Kristen White, that meant participating in a clinical trial. For Lori Monroe and Kim Norris, that meant starting an advocacy organization. Kate and Carrie Steinbeck have become “Young Ambassadors” for Vanderbilt-Ingram Cancer Center, helping to raise money to fund small seed grants so that young investigators can pursue bold new research avenues.

For Martha Lesnick, getting involved meant becoming an advocate for Vanderbilt’s lung cancer SPORE. While she’s not yet sure what her approach will be to raise awareness for lung cancer, she does have one suggestion that she hopes might help to snuff out lung cancer’s smoking stigma.

“I think it would be good to adopt a ‘don’t ask, don’t tell’ policy,” she says. “I think whether a person smoked is important information between a patient and a doctor, but beyond that, I don’t think it’s necessary.”

So if you wondering whether any of the patients in this story smoked, we’re following Martha’s advice: We’re not telling.

***

A Women’s Health Concern

Most women are aware of their risks of breast cancer – and take measures to detect it early.

What most women don’t realize is that the cancer they’re most likely to die from is lung cancer. This year, more women will die of lung cancer than all of the typically “female” cancers (breast, ovarian, uterine and cervical cancers) combined.

Kristen White worries that lung cancer is not viewed as something to fight, as much as something to be blamed for. (Photo by Susan Urmy)

“There are twice as many women dying of lung cancer than breast cancer – a fact that few women know,” says Pierre Massion, M.D.

While lung cancer mortality has fallen slightly over the last decade, propelled primarily by a decrease in lung cancer deaths among men, the death rate in women has remained flat.

There are some signs of hope, though. For unknown reasons, women with lung cancer seem to survive longer with lung cancer than men, with a five-year relative survival rate of 16 percent for women compared with 12 percent for men. And some studies have suggested that certain treatments – for example, cisplatin and gefitinib (Iressa) – may be more effective in women.

As researchers work to understand how lung cancer differs in women, lung cancer survivors maintain a guarded optimism.

“I hope so badly that when my daughter is my age that she doesn’t have to deal with this cancer, and that maybe they’ll be able to do as much for it as for breast cancer,” says White.

As a lung cancer advocate, Lori Monroe admits it is overwhelming sometimes dealing with her own treatment and trying to raise awareness about the disease.

“But what keeps me going is that I have these two beautiful daughters that could develop lung cancer in 20 years. It would be horrifying to me for things to be the same, if they didn’t have any better options.”

***

Quitting Time

Some smokers are able to decide to quit, toss the pack of cigarettes into the trash and never touch them – or think about them – again.

But sometimes the desire to stop smoking is overruled by the body’s own chemistry.

We have proteins (receptors) in our brain and other body tissues that are normally activated by a natural neurotransmitter called acetylcholine. But by a cruel coincidence of nature, nicotine can also bind and “turn on” these receptors (which often are located within the brain’s “reward” pathways, contributing to the rewarding effects of smoking).

Recent studies have identified variations in genes that encode nicotine receptors strongly associated with a person’s dependence on nicotine. Several other genes have been linked to smoking initiation and the ability to quit smoking; some of these genes affect how a person metabolizes nicotine. Another study linked inherited differences in the nicotine receptor to one’s risk of getting lung cancer.

“Smoking is an addiction, not a habit. Every day in my practice as a thoracic surgeon, I see patients who have been unable to break that addiction and are now paying a heavy price,” says Joe B. (Bill) Putnam, M.D., chair of Vanderbilt’s Department of Thoracic Surgery and an Ingram Professor of Cancer Research.

Even after an individual is diagnosed with lung cancer, stopping smoking can improve the patient’s ability to recover from surgery and tolerate other cancer treatments.

“Active anti-smoking policies can be extremely important in preventing or discouraging smoking. And higher tobacco taxes and the tobacco settlement money could generate revenue that gets back into cancer research,” says Vanderbilt-Ingram Cancer Center oncologist David Carbone, M.D.

In Tennessee, however, that revenue is currently not used to support lung cancer research – and very little is used for smoking prevention programs.

While each new medical advance for treating lung cancer provides small improvements in the quality and quantity of patients’ lives, Carbone notes: “prevention really is the best medicine.”

4 Comments

I stopped smoking over 10 yeras now. I wish my husband did. He just died of lung cnacer in July, on our 25th wedding Ann. He could still be here enjoying the family he left behind. I miss him so much. I hate to see anyone go through this disease. It effects everyone you touch

Great article… it really clearly describes the frustrations and issues for those of us facing this disease.
As a never smoker with LC, I look forward to the day when there are some options for early detection for those who are not necessarily considered to be at risk, as well as those in high risk groups.